The Colon Club

Hey all, my first post but I’ve read the forum for a while and have found it informative and supportive. I’ll try and keep this short. (I’ll use American date formats to try an avoid confusion).

My wife was diagnosed 6th Jan 2021 with Stage IV CRC. Initial diagnosis was from a colonoscopy (due to bleeding) with a follow-up PET/CT showing multiple liver mets, single lung met, and a single peritoneal met.

We live in Perth, Western Australia and it’s been a very long 25 months;

01/21 54yo F DX Stg IV – MMR Proficient, KRAS G12S NRAS/BRAF/EGFR wild type
(mets; 5 liver, 1 lung, 1 peritoneal)
02/21 high anterior resection, liver resection, peritoneal resection, port implanted
02/21 FOLFOX
06/21 chemo stopped (8 rounds, 7 with oxi) – liver resection – 1 met non-resectable (section 4A)
08/21 FOLFOX – not oxi
08/21 SIRT left side liver
10/21 chemo stopped (14 rounds total)
12/21 Thyroid cancer confirmed (second primary – papillary with hurthle cell involvement) – thyroidectomy)
03/22 PE (bilateral subsegmental) – Clexane prescribed
05/22 SBRT lung met – 4 treatments
06/22 Krukenberg tumours discovered (bilateral oophorectomy, hemoperitonea during surgery requiring blood transfusion)
10/22 Microwave RF ablation on liver met (post RFA PET/CT showed residual disease)
01/23 Microwave RF ablation on liver met (cancelled in theatre due to more liver mets discovered on live CT)

And this is where we are now; the cancelled liver ablation was 01/18/23. She hasn’t been on chemo now for 14-months and she is relatively healthy and active.

She had a PET-CT on the 12/18/22 and using ‘weasis’ I can compare this CT to the CT during the cancelled ablation. Within 4 weeks, 5 new liver mets have shown up with one measuring 18.5mm they are all on one side of the liver.

We haven’t heard anything yet from our specialists (which is concerning); I’m thinking there’s a disagreement (which is good) and it’ll be discussed during the MDT meeting on Tuesday.

My first instinct is to push for surgery (we understand chemo will be restarted; most likely with an EGFR inhibitor like cetuximab; her liver has regrown from the previous resections and from what I understand they can remove the entire left side. If her current surgeon isn’t willing to perform the surgery (he is awesome and we trust him, has previously said that it would be “tricky”) we will ask if he knows someone who will.

Apart from that; I do like the HAIP therapy at Sloan Kettering, we’re not wealthy but we could find the funds to get to NY and pay for the treatment. My concern here is time; if these mets have all popped up within 4-weeks; something needs to be done quickly.

Some notes (mostly for Australian readers):
- Chemo@home is awesome, reduces stress and risk of infection.
- If you don’t have private health, get it after being diagnosed (they can’t refuse or charge more because you have cancer) – you may not be able to use it for 12 months, but when things get tricky it’s golden. One hospital she stayed in was AUD24K per night.
- SKG has a cancer care card, if you have one they’ll bulk-bill your MRI’s (PET/CT’s are always covered by medicare but you only get one free liver MRI per year)
- Hollywood private hospital now has an emergency entrance; if you have the right card the ambo’s will take you straight there.

Hi ,
Definitely seek other clinical opinions from liver specialist.
My mum had a very quick recurrence. Four liver mets plus regrowth at the resection margin . They gave her more chemo then took away 73% of her liver . That was back in 2010 and that organ remains clear .
Hope she gets a good plan in place ,
STU

Thanks stu, some of the stories on this forum are truly inspirational.

I’m in the process of arranging an appointment with this lot:

https://www.livercentrewa.com.au/

I’ve spoken with her onc’s secretary today and he’s on annual leave till Wednesday; we have scheduled an appointment with him on Wednesday afternoon.

We need a path forward.

We know chemo will be involved (this is probably redundant; but she hates chemo), we just don’t want surgery to be ruled out without speaking to multiple surgeons.

There has been a few incidents in my mum’s long medical history dealing with this disease where we had to become proactive and get our elbows out as her team were not on board for surgery . Both for the liver and her lung but other clinicians were open to it when approached . We are in the U.K. so possible not too dissimilar a health care approach.
In hindsight we assumed this disease was present prior to the first resection and just showing itself . However good margins and going a bit further in terms of resection size did the job nicely . Her disease was evident in segments 4,5,through to 8 but 1 to 3 were clear allowing the bigger resection to take place . She is not alone . Many others too have had successful surgery .
Mum’s is now back in her liver and we are hoping her team manage to hold it back using a single targeted agent !
Winging round to 14 years post diagnosis and now got other health issues but getting the right people in place at the right time has been a game changer .
Look forward to hearing how she gets on .
For what it’s worth mum detested chemo too and had a rough time however given she has not had any since 2010 it’s done a tremendous job !
Take care ,
Stu

Yep, concur. Now is the time for us to get our elbows out. Everything was looking quite good until last week.

To be clear, I’ve no issue with any of the treatments she has received so far. This disease however is a monster and needs to be hit as hard as possible with everything we’ve got.

For supplementary, we’ve got 100% natural CBD/THC capsules, fresh papaya leaves (great for white blood cell count), black sesame seed oil. Along with a super healthy diet of fresh ingredients, many from our own backyard where we don’t use chemicals.

Our health system here is great but it can be complicated; you do still need to look out for yourself. One example was that I had to push to make sure when she had her SIRT it was on day 2 or 3 of chemo (this is supposed to be optimal). I also have a much better idea of our health system now but I’m always learning.

I’ve no issue tapping into other resources, I will of course be 100% honest with her existing (primary?) team. We’re not trying to disrupt their recommended treatments; more expand and enhance them. We (well, she) makes the decision on what treatments to accept; my role is to ensure she has access to the best treatments along with understanding the risks.

Bit of an update – things are moving quickly

We have a referral to see the senior surgeon at liver centre wa, just trying to book an appointment (was told it would be about a week) but it’s a bit late in the day and I think they’ve all gone home.

We also got a call this afternoon from her primary onc:
- He wants to speak to her liver surgeon with regards to options before chemo restarts to see if he wants to operate or do another SIRT before chemo
- No issue with us booking an appointment with the senior surgeon at liver centre wa – appears to know him and sounded like he’d value his opinion
- Chemo would most likely be FOLFIRI (she’s not happy about the hair loss with this) – I asked about an EGFR inhibitor, and he ruled it out for her mutations. I need to do some more research on this.
- He bought up the topic of trials and asked if we’re interested, she would however be excluded from most trials due to the second primary thyroid cancer (we already knew this from our own research) but there may be an immunotherapy trial.

Every choice has massive risk. Surgery obviously has the best potential outlook; but that is only potential, if a new liver met pops up after surgery we would be in a much worse position. Given there was mets to both the peritoneal and overys, there's an increased risk of this.

SIRT is well tolerated; but I’m not sure just how effective it is, I need to do more research.

I don't see chemo alone as an option.

Hi mwalker
Research orthomolecular.org for info on vitamin C since your wife has kRAS.

what were the shot timings on her covid vaccination series?

what was the original story on not using Avastin before the PE? (obviousoy there 6 week zones for surgery etc)
what d-dimer and hypercoagulability data/dates do you have?

There is a lot of crucial and incremental treatment information possible,
original and peak met sizes
original and peak vs present values for 25 hydroxy vitamin D, MCV, LDH, ALP, CEA, CA199, HgbA1C, d-dimer, CRP, ESR

Hi,

I’m in Sydney and although I don’t have tumours in my liver (yet!) I have seen an excellent surgeon for second opinions as he is an expert in RFA but is primarily a liver and peritoneal surgeon. He does HIPEC as well I’m pretty sure. He is known for being aggressive and a lot of other doctors roll their eyes when I say I’ve seen him because he will willingly try things others won’t. He’s at St George Hospital in the south. Might be worth a call. Professor David Morris.

beach walker,

I will check them out; her’s is G12S and not the more common G12C but I’ll read anything.

rp1954,

COVID vaccines:
11/22/22 – Moderna (Spikevax)
12/21/22 – Moderna (Spikevax)
3/2/23 – PE
6/14/23 - COVID infection (Omicron - contracted at the Hospital, antivirals, recovered well)

We only had the two vaccines, was trying to find that balance between being protected and not completely trusting the unknown.

Also important to note that the PE was bilateral subsegmental – I know there’s a lot of discussions recently around subsegmental PE’s; for her, it woke her up at 2am hyperventilating and she couldn’t talk, struggling to breathe, so that was ambulance time.

She had a DVT US and we saw a haematologist 05/22 (surgeon wanted to be sure she could be off blood thinners for a couple of days before her oophorectomy)

I’ve got an s-ton of blood test results; give me a couple of days to collate them.

I’m also still trying to get my hands on more blood test results; some of labs here are reluctant to give them out. I do have all the pathology reports from her primary hospital (including all the specimen results from surgeries including margins) and her gene panel report from 02/21.

Also keep in mind that I’m not asking for medical advice; I’m just searching for clues. Anything that can trigger additional questions for her specialists.

Avastin was never discussed. She was (a very cautious) NED from the 1/6/22 until the PE (she had a PET/CT scheduled for the next day, so the ambo’s thought it was dyspnea from anxiety; but that’s a whole different story).

Mishmash77,

Cheers, I’ve looked him up and seems the goods. We’ve no issue travelling to Sydney (we lived in Maroubra (Marine Parade) for 8 years while working in the CBD and loved it; but I didn’t get the 2035 tattoo.) Will contact him and see if he’s interested, can’t hurt.

We still haven’t spoken with her primary/previous liver surgeon. We’ve left him messages, so I don’t know what’s up. He was always the sort that’d call you straight back and give you a call right after surgery.

I can confirm that Prof. Morris is one of the best in the country for peri mets. Absolute machine. His practice was set up in collab with Dr Sugarbaker in the US, who was the inventor of HIPEC (previously known as the Sugarbaker Procedure). I think Prof. Morris has one of the highest volume peritonectomy practices in the country now.

"Also keep in mind that I’m not asking for medical advice; I’m just searching for clues. Anything that can trigger additional questions for her specialists."

Several consults are always a good idea, lots of spread in information getting to thorough coverage. I tend to try to grill some for a hour with a lot of questions but the best specialist information for our purposes tended to be buried in key papers, patents or posts.

OK, so her surgeon has stated (last Friday) that he doesn’t think there’s a role for further surgery.

We also have an appointment with another surgeon tomorrow morning who’s bio states:

“highly specialised surgical skills, developed in such a challenging specialty as liver transplantation, are offered to all patients - whatever the indication of their surgery may be.”

Both her onc and surgeon are aware of this.

Her MDT is on Tuesday (01/31/23) and my understanding is that they are favouring FOLFIRI and SIRT

We will ask if this new surgeon wants a seat at that table. (Her case has actually been discussed in 2 x MDT’s at separate cancer centres)

We will also ask him his opinion about Prof David Morris.

On the topic of transplants, my understanding is that each state basically has one major transplant centre - with the Austin in VIC, RPA in NSW, and the Princess Alexandra in QLD being the biggest. I believe the PA actually did the first liver transplants in Australia and is still has one of the largest lists. One of my surgeries was done by the head of the HPB practice there, Dr Tom O’Rourke, who is outstanding (I believe he no longer does transplants personally, but a lot of liver surgeries - he was very creative about mine and had a transplant surgeon assisting).

Being public, there will be likely be a transplant board to be qualified by I’d expect.

My understating is that a transplant would be out of the question and that they tend not to give stage IVC cancer patients liver transplants. (to be honest I don't know; just what I was told when I asked)

To make things even more exciting; apparently there’s a “difference of opinion” between two radiologists as to what lesions are recurrent and what lesions are treated disease.

Now, I’m no radiologist (so you know what’s coming next); but I have directly compared the CT portion of her follow-up PET/CT after the first ablation (which used a 128 slice Biograph mCT) and the live CT done during the second ablation attempt. I have the DICOM files for both and to my laymen eyes they look like new mets; as in, nothing on the follow-up CT and new solid mass’s on the live CT.

The radiologist who performed the first ablation was the same radiologist who attempted to perform the second.

Should be an interesting week:
Monday - Appointment with new liver surgeon
Teusday - MDT
Wednesday - Appointment with onc